'All United for MG' organises first-ever European Myasthenia Gravis Day on June 2nd leads to pan-European call for action supported by European leaders

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Jun 01, 2023, 08:00 ET

As part of the fight against rare diseases discussed extensively at European level, the ''All United for MG"¹ coalition, a group of patient associations and representatives², is organising the first European Myasthenia Gravis Awareness Day. The objective is to raise awareness of this rare neuromuscular autoimmune disease and its consequences for patients and their caregivers. The disease has a huge impact on patients' social, professional and family lives as 80% of them have difficulty working, 80% feel frustrated and almost 60% find it hard to meet family needs ³. To elevate the understanding of the disease and improve MG patients' lives, All United for MG issues a call for action with six concrete recommendations in the European Parliament, with the support of European leaders.

BRUSSELS, June 1, 2023 /PRNewswire/ -- The #AllUnitedforMG coalition, with the institutional support of argenx, brings together European patient associations and representatives from Belgium, France, Germany, Greece, Italy, Romania, Poland and Spain and aims to create awareness and gain recognition of this life-threatening disease, strengthen patients' rights for a better quality of life and obtain better patient care. The disease affects between 56.000 and 100.000 people in Europe⁴.

"Raising awareness about myasthenia gravis is not just about spreading knowledge, it's about empowering those who are living with it. It's about fostering compassion and understanding amongst the general public to improve healthcare, break down stigmas, and ultimately create a world where people with MG can thrive. Our aim is to enhance patients' quality of life and reduce their mental burden," conclude the founders of the European Myasthenia Gravis Day.

The burden of the disease is not universally well-understood or recognised across Europe, which creates inequalities in patient care and leaves many patients with underserved needs. The first-ever European Myasthenia Gravis Day is meant to challenge the status quo and is meant to be the kick-off for a broader campaign, in the context of the global MG Awareness month. The coalition – which was formed in February 2023 – is organizing an event today at the European Parliament to raise awareness about the disease and patients' needs, but also to share concrete policy propositions for the EU.

"The first European Awareness Day for Myasthenia Gravis marks an important milestone towards increasing awareness and understanding of this rare disease. The call for action and recommendations contribute to a broader reflection of the role and added value the European Union can have in improving lives of all rare disease patients. It is our responsibility to ensure that the voices of those affected by rare diseases are heard and that they receive the support they need to live their lives to the fullest. By shining a light on the challenges faced by those living with Myasthenia Gravis, we can work towards improving the necessary care." – Istvan Ujhelyi, Member of the European Parliament.

The #AllUnitedforMG coalition formulated six concrete recommendations aimed at championing real change for people living with MG and rare diseases, more broadly:

Expand knowledge and expertise of rare diseases and reduce diagnosis errancy by ensuring that healthcare professionals both GP's and specialists, such as neurologists and opthalmologists for MG, have easy access to informative resources and materials on the disease
Reinforce cross-border cooperation for the treatment of rare diseases like MG, notably by ensuring that patients are eligible for reimbursement of treatments received in other EU Member States.
Ensure mutual recognition of MG patients' disability status and its associated benefits across all EU Member States
Raise awareness about the disease amongst the broader public by creating a European Day dedicated to Myasthenia Gravis, in coordination with stakeholders in each EU Member State
Provide patients and caregivers access to resources on the disease and its potential impact to their daily lives
Promote the creation of centres of expertise across all EU Member States, particularly in Member States where none currently exist.

"The call for action is only a first step towards the improvement of the awareness, understanding and management of this devastating disease. We hope that many more European and national representatives from the health community at large will support our recommendations and help us translating them into tangible actions at European and national level." – Tomislav Sokol, Member of the European Parliament.

Understanding the devastating and life threatening impact of Myasthenia Gravis

MG is a serious, rare and debilitating neuromuscular autoimmune disease with complex and chronic physical symptoms that weaken the body's muscles and can be potentially life-threatening.

Up to 58 % of patients suffering from MG may have difficulties in their daily activities⁵, which requires more than 50 hours per week⁶ of support from a caregiver. 15.6% of caregivers needed to cut back their working hours, and up to 20,8% of caregivers needed to give up paid employment due to the demands of caregiving tasks.⁶ The unpredictability and invisible nature of the disease creates long-term challenges for both the patient and caregiver.

"Myasthenia gravis often manifests first in the face, with early symptoms such as drooping eyelids, or double or blurry vision due to weakness in the eye muscles. Additionally, facial expressions, speaking, chewing, swallowing and breathing may be affected, as well as arm and leg movements. The higher the symptom burden of the patient, the more help they need from a caregiver: amongst patients most severely affected by MG, 4 out 5 require a caregiver," says Dr. Renato Mantegazza, Director of the UOC IV Neurology of the IRCCS Carlo Besta Foundation in Milan. "Because it is a rare disease, some medical professionals are not fully aware. It is frustrating as this regularly results in misdiagnosis, mismanagement and misunderstanding. That is why it is crucial to raise awareness to ensure early diagnosis and proper treatment."

Significant challenges in daily life

Living with a chronic disease can be incredibly challenging, not only physically but also mentally. Patients often struggle with anxiety, depression and other mental health issues as they navigate the challenges of living with their condition. Furthermore, the burden of the disease also impacts the social and professional lives of both patients and caregivers. Because of the difficulties to plan their lives, they often have to abandon their careers or change their working hours, leading to potential financial problems, as well as isolation, frustration and guilt.

According to a study that was conducted by MyRealWorld MG³, 80% of patients have difficulty working due to their illness. On top of that, only 50% are employed, while the employment rate of the general European population aged 20-64 is approximately 73%. In addition, 80% of patients feel frustrated or overwhelmed, due to the daily obstacles they face. Finally, 59% experience difficulty responding to family needs and 43% of patients struggle with their social activities and moving around in public places.

"Living with Myasthenia Gravis is a daily battle, where each breath, each movement, is a continuous effort. The constant physical limitations and emotional strain take a toll not only on me, but on my loved ones as well," says a patient. "Furthermore, our illness is invisible and hard to understand. Therefore we are very happy that there is finally a European Myasthenia Gravis Day to put a spotlight on this disease."

This press release was produced with the institutional support of argenx.

¹MG is short for "Myasthenia Gravis", the English name for the disease.
²Belgium: ABMM, MG Liga, Scientific board member of MG LIGA. France: AMIS, AFM-Telethon Myasthenia interest group. Italy: AIM, Besta Institute. Spain: AMES, San Pau Hospital Barcelona. And with the institutional support of Argenx.
³MYRealWorld MG Survey; data collected in April 2021.
⁴Sanders DB, Wolfe GI, Benatar M, Evoli A, Gilhus NE, Illa I, et al. International consensus guidance for management of myasthenia gravis: Executive summary. Neurology. 2016;87(4):419-25.
⁵Publication BMJ OPEN: Patient-reported burden of myasthenia gravis: baseline results of the international prospective, observational, longitudinal real-world digital study MyRealWorld-MG, Sara Dewilde et al
⁶Productivity Losses for Myasthenia Gravis Patients and their Caregivers: Association with Disease Severity ICNMD presentation, July 2022 Jacob, S MD, Dewilde, S, PhD, Qi, C, MBA, Saccà, F, MD, Meisel, A, MD, Palace, J, MD, Claeys, K, MD, PhD, Mantegazza, R, MD, Paci, S, PhD, Phillips, G, PhD,.1argenx US Inc., Boston, MA, USA. 2Services in Health Economics (SHE), Brussels, Belgium